(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hello Sue, You make very good points here but I believe that Mycobacteria can also cause infection from ingestion. It is documented that MAC is often concurrent with GERDS (Reflux). There is a less well known form of reflux called laryngopharyngeal reflux (LPR) aka Upper Airway Reflux where the refluxate is more aerosolized than with regular reflux and can actually get up into your upper airway and even work it's way down into your lungs. If you do have Reflux and/or LPR and also have MAC you may need to address the reflux with lifestyle and diet changes. I have personal experience with both LPR and MAC. So I do all the preventive measures that you mention in your post but I also try to at least lower the number of Mycobacteria that I take in orally.

@poodledoc Very interesting - I shall have to do some reading. Can you suggest any resources?

This is one of the articles I have seen explaining how gaseous reflux gets into the lungs. https://breathe.ersjournals.com/content/9/4/256 It does not mention NTM or MAC specifically but I have read other articles that do. Also Dr Jamie Koufman is an expert on LPR here is one of her articles http://www.voiceinstituteofnewyork.com/patient-services/treatments/diagnosis-treatment-of-chronic-cough/ She also has a book called The Chronic Cough Enigma you can find on Amazon.

@poodledoc Thanks for the information!

wow super interesting. I know most of us have either the acid or mist reflux because we have gerd or hiatal hernia. Goes along with bronchiectasis. I knew the proton ump inhibitors were rally bad and did nothing but my gastroenterologist kept pushing more and more. Quit them a long time ago an use diet and elevation to combat symptoms, works better! I wish doctors knew more. People taking way too many pills, which now they say can lead to dementia. Thanks for article. xo

Hi @unicorn Could you please tell us what diet changes you made to get rid of GERD. I have been on pills for it for 5 years and having trouble getting off them. Thanks Heather

I am also curious about dietary changes that you've made to reduce/get rid of GERD. My doctor told me not to eat or drink anything for 3 hours before going to bed and elevate the head of my bed to 30 degree angle. It was almost impossible to sleep with this angle so I reduced it a bit and it still seems to be helpful.

There was a good presentation on this at a conference on MAC; someone posted it here within the last couple of months. I watched it but didn't save it and I can't remember where the conference was held or who the speakers were. I'm sorry but it seems to be much the same information as that which I got from my doctor.

Thanks,

@heathert Yes, my local pulmonologist believes that's how I got bronchiectasis and MAC because he asked me if I slept on my stomach and I said I always sleep on my stomach and had for years. Well, I don't really anymore because apparently the reflux aspirates into your lungs in the middle of the night if you're on your stomach. And I was tested for GERD and have it and also have a hiatal hernia and I swear I remember some gastro doctor who was just a friend saying to me that if you have reflux you will always have it. And especially with a hiatal hernia. It's like it's an open gullet to your stomach. So I sleep on a wedge now with a couple of pillows and start off sleeping halfway sitting up but then before the night is over I get rid of a pillow. And I try really hard not to eat foods that cause reflux. But everyone is so different that different foods affect people differently. Like I figured out one night that I couldn't eat apples at night because I had terrible reflux. Imagine that. With apples. So if I eat apples I try to eat them earlier in the day. I also don't take the PPI drugs just because I don't like them so I basically try to eat as healthy as I can. My only problem is chocolate which also cause reflux for some people. I try and pretend it doesn't for me but I can never really tell. Every now and then if I know I've eaten something that might give me trouble I'll take a Zantac but that's only every once in a while. Nan

I believe you are thinking of the National Jewish patient lecture series from last Sept. Dr. Jeffrey King talked about the relationship between GERD and bacteria in the lungs. As I recall, it's not the kind of GERD we are familiar with because mycobacteria don't live in stomach acid. He described a test for the kind of GERD that causes lung bacteria. That test requires a measuring device dropped through the nose into the esophagus which must be left there for 22 hours.

I hope someone will post the link again.

Thanks @nannette thank you so much for that info, its always nice to see what affects others, sometimes I think everything causes it and other times nothing. Went to Singapore and it went completely while I was there, maby we should all move to Singapore, its a great place. I really want to get off the PPI drugs.